I Slept ALL DAY (literally) // The True Meaning of Christmas

I'm not kidding. I went to sleep last night, and woke up a few minutes before 6PM. So, literally, I slept all day. Ah, the joys of an auto-immune disease after Christmas!

After I woke up, I watched Wall.E with my family. No screaming, yelling, fighting, or emotional abuse from my father, either. He got that stuff out of the way yesterday...no later than a minute after we were up.
Nice, huh? But all in all, it was a nice day.

Wall.E- Officially one of my favorite movies. If you haven't seen it yet, I highly recommend you do!

Now my mom, Sam, and my father are watching The Chronicles of Narnia: Prince Caspian. The reason I'm not watching it, is that I'm just too worn out. Yes, after sleeping ALL DAY, two hours sitting in my wheelchair had me worn out. But I don't mind, really. It felt good to sleep, and I'm content watching House with my cat on my lap and typing an update.

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I think this is the first year that I truly understood the meaning of Christmas. GOD, the Creator of the universe, sent His son, a part of Himself, to earth, born of a poor, young virgin, in a place made for animals, to experience pain and suffering, and then died on the cross, for us. And not only did He die physically, but spiritually, too. For three days He suffered the fury of hell, and rose again, to form a New Covenant, that we may have true life! That we may be forgiven of our sins, and be welcomed into Heaven when our mortal bodies die, to live eternally with the One who is God, the one who is true, pure, agape Love, the Great I am...and great He is! And what must we do in return? Nothing, except accept His gift of Love.

Christmas is a celebration of the sending of God's son to earth...the King, born a poor child, in a lowly manger...t0 live and die, for us.

Please Read this Post!

I think I'm going to lose it.

That is what I haven't already lost!

And I don't mean prednisone weight either!!!

~*8i8*~

Before you go, "argh! stop complaining if you're not going to say why you're losing it" (it's a pet peeve of mine), let me tell you that I will tell you. (???)

This is the third (possibly fourth) straight day of sun-up to sun-down appointments.

And if you're not convinced that that isn't enough to make someone loose their mind, let me tell you more.

This is the third (possibly fourth) straight day of sun-up to sun-down appointments, of which have been appointments for not one, but three people, at least two a day, except for today.

Still not convinced?

The night before the first appointment I had an (maybe a few?) appointment(s) (I think) that I can't even remember because of being so exhausted. My mom can't remember either. We can't remember anything about that day at all except that night! What I remember is falling asleep in the car, waking up to a screaming father, getting into bed, falling asleep again, and sleeping until midnight, waking up after all my dreams changed to the theme of, "OMGosh my feet are burning! I must find a cold tile floor to put them on, and by a snow cone machine to drive on the highway with three senior citizens, and to stick my feet in, and sneakily hop on trains to a place with even colder tile!" I woke up and needless to say, my feet were burning. My entire body was burning for that matter! My mom was freezing, and to me it felt like I was in an oven. My mom also said I was fanning my feet in my sleep. I didn't get back to sleep, well, until, umm, two days later. Ish. I was fully awake for at least two hours after that. I tossed and turned, half asleep, until 10am.
I was out of vicoden except for one pill. My mom had tried for days to get ahold of the doctor to write a new perscription, but she was out. We later found out she was in some sort of testing.
My mom had called the pharmacy to see if she thought it was vicoden withdrawl. They said they were 99% sure it was. My mom gave me half of the remaining vicoden, and I 3/4 slept until noon until I had to wake up for the appointment at 1:30.

I'm just getting started!

The first (possibly second) day I saw a doctor working as 3+ types of doctors (who is also going through exams to make sure she's still on top of her game (she is)), who was shocked to find out everything that was going on, and prescribed new braces, new doctors, and possibly a new PT center. This alone took 4+ hours, not including waiting. We went down to orthopedics and got a plaster cast of my legs, which took an hour+ (without waiting time), picked out colors & a "brace tatoo" for my new braces, and managed to get out of there after dark... it was freezing, and we had no coats, and myself no socks. My feet were completely gray. We went through the drive through at Carls Jr (as all my mom had had to eat previously was a granola bar, and I had only had breakfast) and had a fantastic meal (IT WAS SOOO GOOD!!)

At home when my mom told my father how excited she was about the new doctors and the treatments they can give me, with this being the conversation that followed:
"Wow, so they found out the insurance would cover it all. That's great".
"No they didn't. The vast majority is 'alternative medicine'. You know they don't cover any of that."
"Well than why would you even bring it up to me? Why is it even considered???"
"Because it could greatly increase Alex's life quality! She could be walking again, among the other benefits!"
"But the insurance won't cover it, so why are you even thinking about it?!"
"This is our daughter! This can help her so much, and Alex is all for it!"

"SO I GUESS WE'LL JUST PAY ALL THIS MONEY OUT OF POCKET UNTIL WE'RE LIVING IN A BOX BECAUSE OF HER!!!"

"DON'T SAY THAT! You scare the kids so badly! You know that won't happen, but they have nightmares about it because you say it in front of them all the time! How do you think it makes Alex feel thinking that you believe we'll loose everything because of her?!"
"HOW DO YOU EXPECT US TO PAY IT??? I'M JUST CLARIFYING YOUR PLAN!!"
"You know darn well and good we'll find a way!"
*starts stomping of upstairs to "his" room, slams the door*
*says under breath "Like maybe selling one of your timeshares or taking a few less vacations we all hate!"*


The second (third???) day I saw the worst doctor I've ever seen. This gynacologist walked through the door and insulted my mother. She only was worse from there. She was incorrect on MANY things, and didn't go 5 seconds without intentionally insulting, brow-beating, or bullying my mom or I. We later found out they'd been trying to get rid of her but UNM wouldn't fire her without a formal complaint from a patient. So we will be the one to file it. My mom was actually CRYING by the time we left, and she NEVER cries. She was that HORRIBLE that my mom started watering up and I didn't talk the entire time because I was so AFFRAID and INTIMIDATED by this ROYAL B**** (pardon my french...I am just so upset about now!)!!! We then went to my mom's appointment, only to find they would not take our insurance either (so far they've taken none of our doctors), so after waiting, crying & praying, we left, with no more answers than before, except that because of one selfish cuss word in MI (with motives 100% selfish, who KNEW how sick I was & that my mom was disabled) we are basically without insurance and have had our lives completely turned upside-down and are going through hell trying to figure this out. Not to mention my dad's way of being supportive and helping get through this is screaming at us non-stop (no exageration) about things that are totally HIS FAULT or at least mostly!

Day 3 (maybe 4)- Wake up, get Sam to school, pick up Grandma Lois, and head to my grandma's appointment (at a hospital we're unfamiliar with). It was non-stop chaos all day, but we got through it (and with flying colors all things considered). Just not being at home being screamed at and being in new surroundings (though unfamiliar and confusing) was enough to keep us happy and intertained. Of course it exhausted us all, but it was actually sort of fun...an "adventure". Hopefully the mysterious mass in my grandmother's lung is neither a clot nor tumor, but rather just scar tissue that's formed for some odd reason. For whatever reason she is now requiring oxygen 24/7 instead of just at night.

Grandma is my mom's, my brother's, and my rock. She holds the family together and always lends a helping hand and an ear. We would all be lost without her, and, well... she just can't die right now! She can't!!! We need her and we're so affraid! She doesn't want to die either! She wants to stay and help us, and we need her help! God, please heal my grandma! Please, God, let her live a little while longer! Please...please!


Okay, I'm pulling myself together....

We haven't got to do any school this week, which makes us even more behind. If we can't get everything done and in VERY VERY soon, this entire semester won't count and I'll probably end up held back AGAIN. We don't know what to! I can't be in public school, and we can't keep up with this home school program, and I can't be held back again! I'm so overwhelmed and so upset! WHAT DO I DO???

Okay, I'm going to stop now...I'm totally loosing it...

Please pray for me and my family. Please tell your friends & family to pray for my family. Please put us on your church prayer list if you have one as well. We don't know what to do and we're just so scared. Words can't even describe. We need a huge, amazing, miraculous, devine intervention to get through. I'm so scared...so, so scared...

Doctor Appointment Results - Update is Up

Update on the multiple appointments recently, including today's cardiologist appointment, and my new set of tubies

Click Here

Ever been so worried and disappointed about the next day/what you have to do the next day, that you just don't want to go to bed? That it just seems if you fit more stuff you want to do in today that it won't be as bad (though you know you'll just be more tired and make things worse)? Tonight is one of those nights. I have to have a semester done in about a week because I'm so behind due to appointments, being sick/etc. I know that tomorrow I'll go to church and then have to work all day, non-stop. I know I should pray about it and trust that things will all work out, but right now...well, I just don't want to! I'm like a little two year old refusing to take her nap, when I know I have too. I just...am afraid! I'm a control freak and don't want to loose control, for fear I'll loose all control and mess everything up.

Does anyone have some encouraging scripture that can help me? (And please, don't send me one that says "just do it"...my conscious is already telling me that.)
I want a promise...and I want to know that promise will be kept, not another broken promise like I've dealt with so many times with my father.

I've got to go or my mom will kill me for being up! Goodnight!

Alex

Shower Day Depression

No, it's not the various rain showers lately that has me depressed, it's the soap-and-shampoo kind of shower that has me feeling that way.

It's probably the following facts that take it's toll on me:
a) I can't stand in the shower
b) The water/washcloths/sponges hurt my skin
c) I just had [minor] surgery on my toe which was throbbing the entire time
d) My mom has to help me
e) I haven't been able to shower on my own in so long that I have to learn how to do it all over again, just like I am having to learn how to walk all over again
f) I have to sit in a wobbly, slanting, hard shower chair that I almost always almost fall off of (at least once a shower)
g) I have to look at myself (in all it's obesity)

There are plenty more reasons, but I don't want to sound like I'm unnecessarily complaining...you'd really have to have gone through it to fully understand. To be thirteen years old, almost 200 pounds from reasons completely out of your control, and having to learn how to take showers (and walk) again, having to have help from your mother, and all the rest of the stuff, it's easily depressing. Before my mom came to help me with my hair/back/etc, I found myself rocking back and forth, softly whimpering "Old McDonald", not able to use a sponge or washcloth, trying to scrub myself, just crying my eyes out...

I'm doing better now, but it sure takes its toll on me and brings back some unpleasant memories. To feel so helpless, and in a way, hopeless...well, it's just, like I said, depressing. At that moment, I just felt so hopeless...so worthless, and just started wondering what the point was; would I really ever make a difference? Would I really ever impact someone? Or was I just here...to live, and eventually die, with no one besides my mom and a few dear friends remembering me?

Sorry, I don't mean to depress you, but sometimes you just need to let it out in order to get over it.

I've got to get going and try to re-inspire myself...Off to flickr!
Lots of love,
~Alex~

A day of REST~

So, as you probably know, Sunday is biblically to be the "day of rest". It's set aside from reading the bible, catching up on sleep, going to church, etc, etc.

Near every Sunday we *attempt* to get up and go to the late service at church. Now, take into consideration, that what my mom has, and what I have, are all auto-immune diseases, affected by changes in just about everything, including the weather. Not trying to make excuses, but generally speaking, we attempt to get up starting 7am, press snooze, and repeat until we miss church. That aside, onto the story...

So, today, we managed to get up, slowly got ready, and I even brushed my teeth (yet another story for another day)! Sam decides he's too sick to go, and not ready to pick a fight, my mom gives in, though we know good and well he could and should go. My father of course, jumped at the excuse not to go, though even if Sam wanted to go, he wouldn't have. He'd rather go to a Messianic synagogue (not that he's Jewish) and put on a show for everyone....oops, I was attempting to post a non-judgmental, godly blog, but darn it, he just makes it so hard sometimes!

ANYWAYS, we get there, and are swarmed by a hungry pack of church-goers! LOL, okay, so everyone came up to greet us with hugs and punches *er, pats* on the back. We greeted everyone, listened to the sermon and sang some songs. My hands were burning the entire time (they were actually very hot to the touch, and red as well), but we got through it and at the end the pastor asked me to come up and say the....umm...what do you call it? Well, I came up to the front and said "Go in peace, serve the Lord" and everyone else said "Thanks be to God". Which to me is kinda odd, because it's like saying, "You are released" (like you've been in prison and are like "be good now!") and saying "woohoo! thank you Lord! we can leave now!!! YEAH!" Anyways, basically I was the celebrity of the day.

I was about to pass out once we left the sanctuary, and didn't stay to chat long. Just went home, my mom with tears in her eyes. I got home, and took the term "day of rest" litterally...I slept until 6pm, and boy did it feel good! Even if you agnostic, athiest, or just a "Sunday morning Christian", you have to admit...it's a pretty neat commandment to be told to go home and take the day off!

My mom was busy working, my brother playing, my dad, well, being my dad, but I, well, I had my first "day of rest" in a long time.

I thought this would make a good blog, but once I have to explain the backgrounds of everything (like how our diseases have to do with getting up in the morning), it kind of changes the whole jift of things =( Oh well, whatever floats my boat I guess! =p I was also going to write more, but I think I'll go do more of that "resting" stuff...I like Sundays!!!

Update ~ September 20th '08

Things have been going well (knock on wood) and yesterday I walked about 35 (?) feet with my new walker! I don't know what happened but I just kept on going! And of course when one of the PTs said "come on, keep going! You can even kick me on the way", I did! And then when another was in the line of target and I said "watch out, I'm on a PT kicking spree", (and he didn't take me seriously of course), I kicked him! Of course my kicks are more like little taps at your feet, but hey, it was fun!=p
Well, not much else to report... I get my sutures out soon (from the punch biopsies) thankfully, as bandaging them two times a day, my skin is being ripped off from the tape.

Oh, and Riley's life celebration is tomorrow! (see myspace.com/bearbelieves4riley) I so wish I could be there...it hurts being so far away from my little hero's family... Happy fourth birthday Riley...we will NEVER EVER FORGET YOU!!! You are our hero...cancer isn't fair! Your mommy misses you so much and never stops thinking about you...she misses her mama's boy and only boy. Please send lots of angel kisses to her and let her know you're healthy and happy with Jesus...she really needs that right now. So happy birthday to you Mr Ethan-Riley Hardison! Enjoy your Thomas the Train party mommy promised you! We love you so much...

Yipee! Dad's out of town! / Meet Joey

Don't you hate it when someone brags about you, but never complements you unless it's for show?
Don't you hate it when your mother has to fight for the camera if she decides she wants to take a non-posed picture of her kids?
Don't you hate it when someone can say the most hurtful things, but is sure to say it in a way he can deny the meaning, when you KNOW exactly what he meant?
Don't you hate it when someone can live with you everyday and never see what they have right in front of them?
Don't you hate only being daddy's girl around his cow-workers?

Don't you hate not being able to divorce your father?

Well, my dad's out of town (yipee!) and it really makes us realize how much of the "real us" we hide every day in fear of his criticism, lies and arguments. But we'll enjoy it while it lasts...


On another note, my big brother now has a name =) He was, (I may not have all this info correct...it's a sensitive subject) miscarried in the second trimester, about half ways through the pregnancy, where he had to be delivered. They wouldn't let my mom see him (he died of loss of blood due to a defect in my mom's uterus, and because of lack of blood/nutrition he was deformed and "not a pretty site", plus they knocked her out because it was so traumatic and my father wouldn't even hold her hand) or even tell her the gender (supposedly he was not "well preserved" enough to tell, though she feels it was a boy), and my father thought it would be "helpful" in her (ahem, HIS) mission to pretend none of it ever happened, to tear up all the U/S pictures. My mom did it with no support, and the staff was incredibly stupid and hard-hearted (saying stuff like, "just suck that dead thing out already! She's taking up room...it's DEAD for gosh sake!"), and I have no idea how she does it. It always seemed very hard for my mom to talk about, but I've told her different times not to let my dad's stupidity and lack of heart keep her from loving her baby, and things like that, and it seems it helped. Today she came to me and said...well, just read the poem I wrote =)

the pooping dog and nitrates... ?????? A REALLY random night!

"And now, class, we come to the nitrogen fixing bacteria. Here is a dog. It's supposed to be a dog anyways"
*points to tiny stick dog with no ears or nose, with it's tail straight up*
"See Alex, he's going to poop...I know it!"
"Hey Mom! You made me miss what's decomposing into ammonia!"
"His poop!"
"No, Mom, I think the dog died"
"No, he's going to poop!"
"MOM! Let me do my class!"
*throws miniature rubber duck at Mom*
*rewinds DVD*
"And it starts to decompose"
*rewind*
"And it starts to decompose"
*rewind*
"You know Alex, he's going to poop!"
"MOM!!"
"When dogs, and animals, and plants, die, the nitrifying bacteria comes and it starts to decompose"
"THE DOG DIED! NO!!! NOT THE DEFORMED PUPPY!!!"
"WHAT? HE DIDN'T POOP?"
"NO! HE'S DEAD!"
"MOM! Now I've missed how the puppy decomposes!"
"The bacteria stuff ......."
"MOM! You made me miss the next part! Please stop talking! I don't have another duck to throw at you!"
*rewind*
*...*

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We're a bit hyper tonight... It's not our fault the teacher was talking about plants in their convertables going to the drive through to order nitrates!!! (No, seriously, she did...and she has huge glasses, a red afro, and a wardrobe full of shoulder padded, flower printed, 80s style dresses! AND an undescribable accent from who-knows-where...maybe space.......

I hope she doesn't read this!

I may post more tonight, though no ne has even seen any of my posts yet...wow...talking to a wall...er, cyberspace...depressing, isn't it?

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EDIT

So things got even more funny! So here's a quick summary... BTW, Sam is my little brother..."Mom" is my mom"

Mom: Sam, I did a terrible, terrible thing...
Sam: YOU ATE YOUR FACE???
Mom: Where did that come from???
Mom: I accidentally killed a earth worm.
Sam: YOU ATE ALEX'S FACE???

Alex: SAM!!! I'M BLOGGING ABOUT YOU!!!
Sam: WHATT???
Alex: It's just me telling the world about you except no one reads it. So I'm talking to myself
Sam: COOL!!!

Mom: Get out of my bed!
Sam: I'm watching Alex blog!
Mom: It's better than what I have to watch Alex do
Alex: I HATE YOU!!! *jokingly*
Mom: They're teaching her to roll over in physical therapy!
Mom: It's sad when you have to be taught how to roll over!
Mom: But then again, it took you a long time to learn to roll over when you were a baby, too!
Alex: YOU'RE MEAN! *jokingly fake sob*

*Sam rolls out of the room in Alex's wheelchair*

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Sam: WHHHHHHAAAAAHHHH!!! *CRASH*

*Sam comes running in the room, panting*
Sam: By the way, I hijacked your wheelchair!
Mom: Uh, we know that
Sam: I tested your brakes, Alex!!!
*...*
Sam: I went into the kitchen, full speed, then slammed on the brakes!!!!
Alex: I'm not cleaning up the skid markes!
Mom: I know, I'll be the one cleaning them!
Mom & Alex: WEAR YOUR HELMET!!! *family joke*

*Sam runs into the room*
Sam: THAT WAS SO COOL UNTIL I HIT THE FRIDGE!!!!!!!!!!!

*Sam comes full speed prepared to come into the

Mom: Sam! Stop running around!
Sam: I'm not running around!

Sam: CHECK........THIS.....OOOOOOOOOOUUUUUUUUUUTTTTTTTTT!!!!!!!!!!!!!!!!!!!!!
WHOA.

Mom: WHERE'S THE WHEELIE BARS????!?!!!?!?!!!!?!?!?


Mom: Sam, come here! I think I have a better sized wheelchair for you...maybe you won't get hurt in this one!
*Mom holds up a doll-sized wheelchair*

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I think you get the drift...we have so much fun once dad's out of the house/sleeping